mr_nurse2U's Journey with Primary Mediastinal B-Cell Lymphoma

Survivor: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Diffuse Large B-Cell Lymphoma > Primary Mediastinal B-Cell Lymphoma

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: about 12 years ago, Male, Age: 60, Stage III

  1. 1
    • mr_nurse2U
    • Experience with Primary Mediastinal...
    over 4 years ago
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    Oh No

    I was having urinary urgency. I thought I had an overactive bladder or maybe an enlarged prostrate. The PA was about to write me a Rx for an overactive bladder. But first he laid me down on the exam table to palpate my abdomen/pelvis. The second he touched my pelvic area I could feel a tumor that extended from skin level to my spinal cord. I saw his face go white. ( I have numerous lyphomas (fatty growths, genetic) all over my body. I had asked him to schedule me with a dermatologist to map all these growths so if something more serious were to come up it would be easier to tell what was happening. He told be that he had worked in a dermatologists office at one point and he could keep track himself. He left the room and had the D.O. come in to examine me. I was scheduled for a needle biopsy.

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  2. 2
    • mr_nurse2U
    • Experience with Primary Mediastinal...
    over 4 years ago
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    Can't wait for biopsy scheduled too much Pain

    Oh No

    Before the appointment for the needle biopsy, I could not stand the pain driving to my son's baseball game. My wife took over driving. I laid down in the back seat fro comfort. I was fine standing up during the baseball game. On the way home I could not even tolerate lying in the back seat. When I got home I called the doctor. He told be to go to emergency. He was admitting me. The next day I had a needle biopsy.

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  3. 3
    • mr_nurse2U
    • Experience with Primary Mediastinal...
    over 4 years ago
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    Misdiagnosed

    Oh No

    The doctor who I had never seen until the tumor was discovered (Always saw his PA.) came in my room and told my wife and I that I had sarcoma. My wife's brother had died of testicular cancer when he was 20 years old. My wife had conducted some research about the possible cancers I might have and that was the worst. My wife went out to tell the news to some interested parties by phone. What I did not know until later that when my wife left the room she took a few steps and almost passed out. My brother-in-law caught her before she hit the floor. It was too early for all the stages of the pathology testing results to be in. Based on the incomplete testing it was possible that I had sarcoma but there were many other types of cancer that have the same early results (cell markers). In a few days all the pathology test woould show that I had diffuse large B-cell lymphoma.

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  4. 4
    • mr_nurse2U
    • Experience with Primary Mediastinal...
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    When the procedure was completed, I could feel my heart valve for the first time. I asked for the placement of the catheter to be imaged again. It was properly placed but now I was sure it was in the correct place and not going through my tricuspid valve.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
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  5. 5
    • mr_nurse2U
    • Experience with Primary Mediastinal...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    My CHOP-R treatment went well. I was afraid of throwing up but I never did. The amount of benydryl I was given knocked me out everytime (8 rounds)

    Easy to Do: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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